SUDEPAware

April 22-29 is Canada's National Organ & Tissue Donation Awareness Week (#NOTDAW)

April is National Donate Life Month in the USA (#DonateLifeMonth)!

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UK

• The Royal College of Pathologists ‘Guidelines on Autopsy Practice Scenario 6: Deaths associated with epilepsy’ (2005, currently under review and to be completed by the end of 2018).

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US

• Legislation requiring:

  • SUDEP be noted on the death certificate & the case be filed with the North American SUDEP Registry [as at Sept 2018, includes State of New York, State of Illinois & State of New Jersey]

  • Medical Examiner training about SUDEP [State of New Jersey]

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It is an opportunity to work together to raise awareness for organ/tissue donation and SUDEP Aware is urging people living with epilepsy and their families to take action. Organ and tissue donations can be gifted for transplantation and they are necessary for researchers investigating how to prevent Sudden, Unexpected Death in EPilepsy (SUDEP).

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When a person with epilepsy dies without warning and without an identified cause, even at autopsy, it is termed a SUDEP. Studies estimate 1 in 1,000 adults with epilepsy is lost to SUDEP each year; and almost 1 in 100 per year for people with frequent seizures that are poorly controlled with medications. Determining how to prevent SUDEP is vital and urgent. Research is essential and strongly relies on organ/tissue donation for that purpose.

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How to register as a tissue/organ donor

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1 organ donor can save up to 8 lives.

1 tissue donor can improve up to 75 lives.

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If you live with epilepsy and wish to donate your organs/tissues for transplantation, it is important to officially register your decision with your local organ procurement organization (OPO). In most cases this can be done online with a quick and easy sign-up.

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To find your local OPO, its registration requirements (such as, age limit or need for a personal health number) and answers to frequently asked questions, use the following links for Canada and the USA.